Thursday, September 11, 2014

Pain Mngmt Appt. -

Today's Appt was long but went fine and in reality was productive I guess you might say. My Pain Mngmt dr. is good at what she does and given she has a wide background (trained in Anesthesia, Hematology/Oncology and certified in Pain Mngmt) she brings a somewhat unique perspective to my care Team.
One of the many things we talked about was the low back to L leg symptoms and Dr.Bragg's wanting to try spine injections (epidural or steroid) to see if the area she is concerned about is in fact the area that is causing the symptoms. Due to a fluid (it seems) pocket around the area where my former LP Shunt was and where we previously had issues w CSF fluid pockets Dr.B is first considering an Ultrasound but done by one of the Radiology docs she works with. She asked me to send her the MRI reports (I guess she didn't get the ones faxed) and she'll talk to her Radiology Colleagues.
She isn't ruling out injection(s) but first wants to gather information both from potential ultrasound (of the soft tissue/what she is concerned is CSF accumulation although an on-going small area and not new, just not absorbing either). Also would want to talk to Dr.Bragg and make sure she and Dr.Bragg where on the same page + Cardiology and verify they where ok (due to light sedation).

Dr.B formerly did all MRIs (ordering) for the 2.5+ years she had seen me prior to my starting to see Dr.Bragg so she is familiar with how my spine looks (varies from a "normal" spine and as well has done a series of previous spine injections both steroid, epidural (lumbar/thoracic) and Radiofrequency Ablation (RFA) in my Thoracic spine so she is familiar from that avenue what my spine is like to get in to.

I said that I feel a bit badly b/c honestly I have been a bit burned out lately on trying to coordinate drs., communication, setting up appts., canceling and re-trying to coord. (canceling one to make another work, though thankfully in the 1 case my Cardiology Team is fantastically flexible and my Neurosurgery Team is as well).
Dr.B gets it and though she deals w the chaos of how much medicine has changed from a drs. perspective (how they have to see so many more pts., how drs such as Dr.Bragg employed by Hospitals have to see so many more pts., and yet how they all still have to squeeze in seeing in-pts, dictation and any outside things they are involved in on top of if they are married (Dr.B is not but most of my Providers are and in Dr.B's case she talks about (due to my interest) in all that she has going on with the Am. Academy of Pain's advocacy but trying to fit that in and never feeling quite adequate at all of it. (She is amazing and though).
sometimes her wait times can be long, but when she spends 45mins trying to get to the bottom of an issue I never have a problem w/waiting and have learned w all my drs to plan accordingly as it just means they likely also do the same for other pts. I'd rather have a caring dr. that falls behind than an asshole for a dr. who doesn't give a shit and is always on time (to be perfectly blunt).

(LOL, I was definitely tired but we had a good chat, I was able to answer questions she had about Dr.Bragg's perspective and answer questions she had about symptoms, was it an infection (we know it isn't or atleast from right after the last surgery CSF was clear) to which Dr.Bragg was happy with this though commented "I am happy to know that but it's always nice when it's very recent" (I don't think she thinks the low back/leg symptoms are an infection is more that she is just concerned what is the fluid-ish/puffy area. She said and I think she is right it has been there a while just a curiosity I suppose why it doesn't go away).

One thing Dr.B. did say and emphasize repeatedly while indirectly trying to get me to let her I think admit me to her ER (I politely refused) is that it isn't normal to "just walk around with increased intracranial pressure and vision changes" and she personally wished it would be addressed. I said that is really in a way my fault b/c 1. I have a way of making light of how I feel, 2. symptoms are intermittent and so while they are lasting much longer lately they do intermittently go away. I think if I really told Dr.Bragg how bad the headaches get she might do something (I could be wrong) but Dr.B then made the comment (as I know she appreciates that someone finally besides her could see the symptoms for what they where 3+ yrs ago) that she has been glad that someone like Dr.Bragg listens, is proactive and repeatedly tries to help despite our many shunt problems. I think really in a way Dr.B just worries about her patients (it's very obvious if you knew her) and is glad that someone else keeps trying.
Personally I just am not at a point where I feel I need to be pushy or maybe it's not that but maybe it's that I just need a break and I am not ready to call Dr.Bragg's office and be seen sooner. I do have an Appt next Thurs., I could have seen her a wk ago but just needed a break from drs in general. Nor do I think it's bad enough that I can't manage. Sure when the headaches are there it sucks big time but I've been around this block enough I know how long to get up before I have to be anywhere, I just don't do as much in general and I feel worn out-but on an energy level not on an emotional level.
I think we ALL need a break from MPS and all the b.s that goes along w it sometimes!?!? I promised Dr.B if I still felt like this next Thurs I wouldn't make light of it and I would try to be as honest as I could with Dr.B and see if we could do something for the headaches. Another comment she made was: "How much can one person take", which I think when it really comes down to it you can take a lot (what's the other option?) and you either let what you have rule your life or it just, no matter how you feel is a part of your life. Perhaps not a welcome part but non-the-less a part.

Somewhat interestingly she to like several other drs both mine and ones in the MPS community feel very leery about the Cranial Vault Expansion talks and in Dr.B's words, not that she in any way was trying to say she knows more than Dr.Bragg (nor are these other drs especially the ones who know MPS inside and out) but "why borrow more trouble when you already have a list a mile long of issues to sort through" (meaning she is concerned it would cause other unforeseen complications). I don't have an answer but having talked to atleast 1 parent whose child had it done (non-MPS) and knowing they would not chose to do it again it is not tops on my list of options.
In any case it is interesting how that particular topic keeps resurfacing with many drs. though thankfully it is on the back burner so to speak with Dr.Bragg atleast for now.
I see Cardiology Tues and Dr.Bragg (Peds Neurosurgery) Thurs., will try to update after either.
Thanks for stopping by,
Erica

Here's a pic of the 1st day with my new Sunday School class - 3rd/4th, I had some of the kids last yr.
'God creates Man and Woman', the stars where the '7 days of Creation' w the center being 'God rests'.

Wednesday, September 3, 2014

A year ago..

Believe it or not exactly a year ago at this time I was still in surgery for the 2nd (repeat) OHS (Mech. AVR, Konno, VSD re-do) - hard to believe actually! I see Cardiology in a couple wks for f/up Echo (generally done every 6mo) and hopefully the mitral valve will not have progressed since the new changes where found (mitral valve) in Febr.
I never did get off any of the cardiac meds I was on prior to the 2 OHS and in fact doses where increased + another med added due to heart rate being high and concerns with the mitral valve changes. I'll be happy if the valve is stable though and no changes!
Otherwise in the year since the 2 OHS I've had approximately 5 or 6 other surgeries for the shunts both to replace the TPL Shunt back in to the Pleural Space, to close open incisions (VPS) and to shorten the TPL Shunt catheter. It's sort of been a wild year but then again haven't all recent years!? =)
I talked to Dr.Bragg's Nurse for quite a while earlier about both my Pain Mngmt dr not necessarily agreeing with Dr.Bragg's plan/thought regarding the Lumbar/low back and L leg symptoms + as well about the headaches seeming to increase in frequency/length and vision being such an issue with reading (=/) though the intensity thankfully isn't a lot worse.
Regarding the headaches she gave me the option to see Dr.Bragg tmrw but for several reasons (including so I can talk to my PM dr a bit before the appt next wk) I took next wks appt instead. Dr.Bragg's other appt day is Monday's but given my Infusion even she commented right away that wouldn't work (LOL, clearly I've seen these guys to much). Her Nurse was also going to fax their most recent clinic visit notes and MRI results to Dr.B and asked that I have Dr.B include them in her dictated office notes in the future so they can know what Dr.B is thinking.
Hopefully Dr.Bragg might have had a chance to talk to her Research Coord. and hopefully we can figure out a solution or plan for the low back symptoms be it injections (I am leery of them though not for it being painful but at the same time I guess I can't see why it might not help us figure out if the area Dr.Bragg is concerned may be the culprit is in fact the culprit..) or whatever.
I also hope we can figure out some plan for these headaches, originally we had planned to wait to deal with these till after we dealt with the low back symptoms but I am not sure we're going to figure out a solution to these symptoms any time quick? Guess we'll see..

Otherwise Sunday School starts up again this weekend; this will be my 3rd year teaching which also seems a little hard to believe. The one bad thing about this is it's early-ish in the morning which means getting up even earlier to give the headaches time to improve (=/) and I am not one of those people who can fall asleep early or easily!
I also have a plane ticket bought (the Foundation I work for reimburses) and hotel reserved for the upcoming 'Mini-World' Lysosomal Mntng in Minneapolis-St.Paul (next to Mall of America). That mtng is towards the end of Sept. should be interesting and if nothing else is nice to see friends from Genzyme there and some of the Med Providers I know (gives a chance to talk to them in person).
Thanks for stopping by,
Erica <